Most of us have heard these before; the HS misconceptions. It doesn’t matter how confident we are in our disease, triggers, or bodies; these misconceptions still sting. These misconceptions or stigmas result from repeating old, outdated information repeatedly, which is what gets ingrained in people’s brains as truth. It takes a long time to undo the damage that these stigmas can and have done to the HS population, and unfortunately, they are to blame for the misdiagnosis and the amount of time it can take to get a proper HS diagnosis. They may be just words, but they’re dangerous.
The leaders of HS Connect, a patient-led non-profit organization committed to connecting the Hidradenitis Suppurativa community, including the medical community who treat us with resources, support & solutions, are here to help separate the facts from fiction.
Most of us have heard at least one of these:
Nope, nope, nope. These points carry the power to bring us to our knees, make us feel bad about ourselves, and question ourselves. We can change that amongst the HS community and give those who follow in our footsteps a better chance than we’ve had.
Unfortunately, the misconceptions run deep, including being ingrained in the opinions of some in the medical field. Seeking help from those who perpetuate the stigmas is counterproductive, and we’re working diligently to change that.
Here’s a quick breakdown of HS before we get into the misconceptions:
Hidradenitis Suppurativa (HS) is a complex, chronic, and debilitating inflammatory illness also referred to as an immune-mediated inflammatory illness and follicular occlusion. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found. HS is primarily a follicular occlusion rather than a sweat gland disease; however, depending on the situation and severity, glands may be involved. HS significantly impacts our quality of life physically, mentally, emotionally, and financially.
You can develop hidradenitis anywhere where there are hair follicles, which means anywhere on the body except the palms of your hands, soles of your feet, and lips.
A common misconception is that HS can only develop where hair grows. There’s not always hair or hair growth everywhere follicles are found to develop HS in that area.
Another common misconception is that HS is a gland or sweat gland illness only affecting gland-bearing areas where there are sweat glands, which is also not accurate.
For women, it is reported that the most commonly affected areas include the armpits, under breasts, and groin areas. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.
For men, it is reported that the most commonly affected areas include the armpits, back of the neck, face, and groin. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.
Abscesses or lesions should not be referred to as boils. Learn more about how to refer to HS here.
There are three Hurley stages used to determine the severity of HS. The Hurley stages can vary per body part; you could be in stage 1 in your armpits and stage 3 in your groin. While there are other scoring/rating/points systems around the world, they are rarely used.
Read more about the Hurley stages here.
Now, on to the misconceptions and stigmas:
Nope. This has nothing to do with you, something you’re doing or not doing. There may be things that trigger your HS, but it has nothing to do with anything you’ve done or are doing. You did not create this issue with your body. HS does not discriminate based on age, race, sex, religion, sexuality, blood type, or anything else.
THIS IS NOT YOUR FAULT.
THIS IS NOT YOUR FAULT.
THIS IS NOT YOUR FAULT.
It Must be Because You're Not Cleanly
Nope. Quite the opposite. In most cases, those with HS are cleaner and shower or bathe more often than those without due to the odor that can come with our abscesses.
Our abscesses smell as a result of pus, which is a combination of dead white blood cells, bacteria (good/bad), tissue debris, serum, and living or dead microorganisms. Many of us can have a smell that seeps from our HS abscesses with no sign of infection when cultured. Other HS sufferers have no smell with their abscesses whatsoever. Depending on your stage, you may also have scar tissue and tunneling, which can collect pus, sometimes for years, which can also contribute to the smell of an abscess.
It Can't be HS Because You're *Insert Reason Here*
As noted above, HS does not discriminate against age. HS can affect children before puberty and even start or continue after menopause. While it is most common that HS symptoms begin during puberty, they can start at any age and do not stop based on puberty or menopause. While HS in North America is reported to be more common among women, data from other countries show a higher prevalence of HS in men. Read more about HS in the male population here.
You Have HS Because You're Overweight
Nope. Many people have HS who have never been overweight. HS doesn’t discriminate against body type. Many who are diagnosed with HS find it difficult to exercise due to pain from flares or flares that come from friction and/or sweat from exercising. HS may be more common where skin touches other skin, which may be more common when overweight. Read more about HS and weight here.
Only You Would End Up with a 'Rare Condition'
HS is not rare. HS is believed to affect 1 to 4% of the global population, representing just the reported cases (this does not include capturing the misdiagnosed and those who do not seek medical care). We believe the 5-10 year average time for a diagnosis plays a significant role in the number of reported cases.
Based on the research to date, women are three times more likely to be affected by HS in the US. However, in other countries, men are more commonly afflicted with a much higher percentage than women. Read the Statistics for HS article here, and the ‘We are NOT a Rare Breed’ article here.
No. The very definition of contagious is spreading from one person or organism to another by direct or indirect contact. If HS were an infectious disease or contagious, it would be an epidemic. HS has never been an epidemic or an infectious disease. If one of your abscesses has staph or MRSA, that can be highly contagious if precautions are not taken. However, that is a secondary factor and does not mean HS is contagious.
Are You Sure It's Not an STD?
No, HS is not an STD. Unfortunately, some of us have been accused of this one too often when visiting a doctor who doesn’t know anything about HS. This can be difficult to navigate when entering a new intimate relationship.
There is no evidence or research classifying HS as an autoimmune illness. The past several years of research suggest HS is anti-inflammatory, affecting our innate immune system (nonspecific defense mechanisms that come into play immediately or within hours of an antigen’s appearance in the body). HS has been identified as a complex inflammatory follicular occlusion illness, also referred to as an immune-mediated inflammatory illness.
The best way to explain the difference between autoimmune and autoinflammatory is that autoimmune attacks and auto-inflammatory reacts.
While there are “typical locations” for HS, as shown on the chart above, HS can impact anywhere there are hair follicles on the body. Again, this does not mean that there must be hair for there to be a hair follicle. HS can develop anywhere on the body besides the soles of the feet, palms of your hands, and lips. Just because the other areas are not as common doesn’t mean it can’t happen there.
For any of you who read this and felt vulnerable, uncomfortable, taken back to a place you once were, a feeling you once had, or memories it may have brought up, please use that as courage to help break down these stigmas for others with HS. Let’s help make their fight a little less difficult and their road a little less bumpy.
The only ones who control changing these stigmas and setting the record straight on HS are us, the warriors, the fighters, the sufferers, the strong, the tired, the resilient. It doesn’t take much to start a chain reaction, a change. It starts with spreading truth and science-backed information. It begins with conversations and with open minds. Next time you hear one of these stigmas, please take a moment to correct it, not from a place of anger but from a place of information, power, and knowledge, which will eradicate the HS stigmas one at a time.
* This blog is for general skin, beauty, wellness, and health information only. This post is not to be used as a substitute for medical advice, diagnosis, or treatment of any health condition or problem. The information provided on this Website should never be used to disregard, delay, or refuse treatment or advice from a physician or a qualified health provider.